Coronary artery spasm

[EllaTyson]

Hi Everyone hope you all had a wonderful Christmas. I have a few questions if anyone can help? In July I passed out 3 times in a week (the only time I have passed out) Dr's said my blood pressure was low and did lying standing bps and a tilt test all with no issues they then put an ECG/telemetry on me for 72 hours which resulted in a phone call asking me to get to the hospital as quick as I could they thought I could have a heart attack at any moment - 3 days later & a change in hospitals they decided I had coronary artery spasm and sent me home with Amlodipine with a follow up 4 weeks later when Consultant put my dose to 10mg and give me a GTN spray. My questions are as this was all happening my menopausal hot flushes changed and I have heard of people with hormonal issues getting COS has anyone else heard this? or know this to be true? Is it normal to sleep as much as I am? (up to 9 hours during the day?) I often feel like even when I am awake I am trance-like and not quite with it. My spasms seem to come through the night following a hot flush. I am hoping to go back to work soon but am scared I won't be able to cope with the long hours and being on my feet all day ( I work in a Hospital) How do other people cope? has anyone problems driving? Sorry, I just have so many ? and no one to answer them my consultant has only ever seen 5 people with this condition in 30 years? and I don't even have any follow-up appointments. My dr has never seen anyone with this condition. So any help would be greatly appreciated.

[Milkfairy Heart Star]

Hello EllaTyson

Welcome to the forum.

Vasospastic angina is the term now more commonly bring used to describe Coronary artery spasms, Prinzmetal/ Variant Angina.

Vasospastic angina is with Microvascular angina a type of non obstructive coronary artery disease ( NOCAD) or another terms used are Angina/ Ischaemia non obstructive coronary arteries.

Have you had an angiogram?

The condition is often overlooked, under recognised and undiagnosed. Unfortunately there are few Cardiologists who have the wxpert knowledge to care for us.

It can take time and patience to find the best combination of medication that will help treat you best.

Vasospastic angina is a long term heart condition and you do need ongoing input from a Cardiologist. I suggest you ask for a follow up appointment with a Cardiologist who has some knowledge of Vasospastic angina or is willing to learn.

I 've lived with vasospastic angina for over 8 years and I am under the care of a supportive Cardiologist who I can email if necessary. I have also had input from world experts in my care too.

There are quite a few of us on the forum living with Microvascular and or vasospastic angina.

I am sure they will be along to share their experiences with you too.

Have a look at the BHF information on the website below, it was written with input from an expert patient by experience along with leading expert Cardiologists.

bhf.org.uk/informationsuppo...

[EllaTyson in reply to Milkfairy]

Thank you so much I am actually not sure what I had to diagnose it I got sent to a different hospital to have a stent fitted and that's when they realised my values weren't blocked

[Milkfairy Heart Star in reply to EllaTyson]

It is good to hear that you weren't just sent home being told that your chest pain was not heart related.

That happens to many people when they see your coronary arteries are unobstructed.

If you are still having angina at rest then I suggest you ask for a follow up appointment with an experienced Cardiologist.

The treatment for Microvascular dysfunction and vasospastic are different. The symptoms almost the same.

So it is important to have the correct testing to see if your problem is caused by Microvascular dysfunction or vasospastic angina.

Did they say that they could see your coronary arteries going into spasm during your angiogram?

You usually get alot of chest pain when this happens with ECG changes.

Have you been offered cardiac rehab?

Before returning to work ask for a review from Occupational Health so you can have a phased return to work and any reasonable adjustments to your work environment can be made.

As well as the cold mental and emotional stress can be triggers for vasospastic angina.

Here's some BHF information about Microvascular angina

bhf.org.uk/informationsuppo...

[EllaTyson in reply to Milkfairy]

I do believe as they did the angio thing my heart must have gone into spasm as they knew straight away they said my values etc were pretty good but to stop smoking and give me amlodipine and 2 hours after sent home 4 weeks later had cardio follow up where they give me a gtn spray double the dose and told me to take it at night since then i have no idea what is classed as normal what i should expect is t normal to feel this tired ?

[Milkfairy Heart Star in reply to EllaTyson]

It may be the medication or your body reacting to your vasospasms.

I get very tired too. I don't sleep well as my chest pain keeps me awake at night it's exhausting.

I have learned overtime to pace myself.

Smoking is another trigger of vasospastic angina.

Have you been able to stop smoking ?

It may help if you ask to be reviewed by a Cardiologist who understands vasospastic angina.

I have over my 8 years met many Cardiologists and only a handful really understand the condition.

One of whom is now my Cardiologist, the other 3 are researchers and have advised on my care.

The good news is that there is now alot of interest and research into Microvascular dysfunction and vasospastic angina.

[EllaTyson in reply to Milkfairy]

Yes I have stopped smoking (still finding it hard) did you go back to work? did you find you managed? I am still waiting for occ.health to get back to me. I just don't know what kind of help in returning to work to ask for other than a phased return ?

[Themcgeevers]

I’m sorry to hear you are struggling to get your symptoms recognised I have had similar problems for the last 3 years leading to 2 mi that I was told couldn’t happen as symptoms in my head . I then had tests including cardio stress mri and told I have MVA . then nothing just told big arteries clear so get on with life and discharged from cardio care . Now finally my Gp who has been very supportive and honest about her lack of expertise throughout but frustrated by local hospital response has referred me to the Brompton where I believe milk fairy says there is a specialist . I hope you get on ok but if not ,ask for a referral to a specialist who knows about your condition . Take care wishing you a healthy new year x

[Milkfairy Heart Star in reply to Themcgeevers]

Hi Themcgeecvers Good to hear you have finally been referred to a specialist.

Everyone with Microvascular or Vasospastic angina need to be monitored by a Cardiologist.

However the Royal Brompton doesn't carry out testing for vasospastic angina which is a different but related condition to microvascular dysfunction

Their expertise is more about Microvascular angina.

I was referred elsewhere.

I saw a Specialist at St Thomas's Hospital where they do the testing for Microvascular dysfunction and vasospastic angina.

It's important to know which condition you have so you can have better targeted treatment.

I was once given beta blockers which are helpful for people with Microvascular dysfunction but make coronary artery vasospasms worse . I spent 5 days in CCU as a result.

I hope you get some better help from the specialist.

I wish you a healthy New Year.

[Nep05 in reply to Milkfairy]

Hello Milkfairy, I’ve only recently discovered this forum and I want to say thank you for information and links that you’ve given in various replies.

The INOCA one was a revelation and watching their 2019 videos was so enlightening.

I’ve had symptoms for 8 yrs and all the tests 2 yrs ago found me discharged back to GP with meds and a suspicion it’s micro vascular or CA spasm.

Long story short, with your unknowing help, a team at Guys (I have a another condition that closely monitored there) is going to help with a cardiology referral and I’ve mentioned St Thomas’ mostly because it’s linked. It’s so difficult when different conditions are treated across separate trusts. Thank you.

[Milkfairy Heart Star in reply to Nep05]

Hi Nep05,

I am glad to hear that you are able to access the care you need.

You might find this website helpful too.

It was written by 4 patients with over 50 years combined experience of living with Microvascular and vasospastic angina .

The research team at St Thomas's is a supporter of this patient group, along with over 25 world expert Cardiologists.

You can see details of their research and some other webinars.

internationalheartspasmsall...

Good luck !

[Nep05]

Thank you!